Danish Childhood Cancer Registry

Henrik Schrøder,1 Catherine Rechnitzer,2 Peder Skov Wehner,3 Steen Rosthøj,4 Jens Kjølseth Møller,5 Birgitte Lausen,2 Gitte Petersen,2 Mette Nørgaard6 1Department of Pediatrics, Aarhus University Hospital, Aarhus, 2Department of Pediatrics and Adolescent Medicine, Rigshospitalet, Copenhagen University Hospital, Copenhagen, 3Department of Pediatric Hematology and Oncology, Hans Christian Andersen Children's Hospital, Odense University Hospital, Odense, 4Department of Pediatrics, Aalborg University Hospital, Aalborg, 5Department of Clinical Microbiology, Vejle Sygehus, Vejle, 6Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark Aim of database: The overall aim is to monitor the quality of childhood cancer care in Denmark; to register late effects of treatment; to analyze complications of permanent central venous catheters (CVCs); to study blood stream infections in children with cancer; and to study acute toxicity of high-dose methotrexate infusions in children with leukemia. Study population: All children below 15 years of age at diagnosis living in Denmark diagnosed after January 1, 1985 according to the International Classification of Diseases 10, including diagnoses DC00–DD48. Main variables: Cancer type, extent of disease, treatment, participation in international studies, recurrence of malignant disease, survival, yearly follow-up status, causes of death, and development of secondary malignancies. Type of CVC, causes for removal of the CVC, type of blood stream infection, pathogens isolated, antimicrobial sensitivity, and outcome of antimicrobial chemotherapy. Descriptive data: Since 1985, 4,944 children below 15 years of age have been registered in the database. There has been no significant change in the incidence of childhood cancer in Denmark since 1985. The 5-year survival has increased significantly since 1985 and is now 86%. The median number of days from diagnosis to initiation of therapy is 7 days and in 80% of the children less than 14 days. Clinical data of 95% of the patients are reported to open international studies. Conclusion: The survival of Danish children with cancer since 2003 compares favorably with other international population-based studies. The annual reports support the collaboration within pediatric oncology in Denmark. Keywords: childhood cancer, epidemiology, survival, complications